Tuesday, March 15, 2011

Lyme Disease Task Force to hold hearing in Roanoke

A former Virginia lieutenant gubernatorial candidate is a champion for Lyme disease because it affects his wife and some of his children.

Mike Farris and Vickie Farris say chronic Lyme disease has greatly affected their family, including Vickie and seven of their children.

Photos by Kyle Green | The Roanoke Times

Mike Farris and Vickie Farris say chronic Lyme disease has greatly affected their family, including Vickie and seven of their children.

Vickie Farris (center) gets an IV central line dressing from nurses Michael Nutry and Jamie Cotterman earlier this month. Longterm antibiotic treatment is the most controversial treatment for chronic Lyme disease, and Farris says it's the only thing that has provided pain relief.

Vickie Farris (center) gets an IV central line dressing from nurses Michael Nutry and Jamie Cotterman earlier this month. Longterm antibiotic treatment is the most controversial treatment for chronic Lyme disease, and Farris says it's the only thing that has provided pain relief.

Meeting tonight

The Roanoke hearing of the Governor's Lyme Disease Task Force will meet from 7 to 10 p.m. today at Stonewall Jackson Middle School, 1004 Montrose Ave. S.E. Virginia residents are invited to speak (about five minutes per speaker).

PURCELLVILLE -- Here in the far reaches of the Washington, D.C., suburbs, in the western part of the richest county in America, there are more deer than there are poor people.

From the leather sofa in the living room of his sprawling home, Michael Farris has seen as many as two dozen deer grazing on his expansive lawn.

He's tempted to shoot them, having taking up hunting as a way to connect with potential donors of the two organizations he founded: Patrick Henry College, the nation's first higher-education institution for home schoolers, and the Home School Legal Defense Association.

"But if I missed, I could put a bullet through my neighbor's house," he said.

Once a candidate for Virginia lieutenant governor -- he lost to Don Beyer in 1993 -- the 59-year-old activist has added a new passion to his repertoire of causes. It's a disease spread via infected deer ticks, and it's wending its way into statehouses and town-hall meetings, including a hearing in Roanoke tonight.

Appointed to lead Gov. Bob McDonnell's Lyme Disease Task Force, Farris is challenging the state's medical establishment to take a hard look at the way it diagnoses and treats acute Lyme and its chronic, long-term counterpart -- a condition that most infectious disease experts refute outright.

Once hailed as a right-wing Bobby Kennedy, Farris is using his charisma and legal acumen, trying to usher forth a new era in the treatment of Lyme, which he says has laid up the majority of his family and as many as 17 percent of his co-workers.

Long a champion of creationism -- to the point that several Patrick Henry professors left the college in 2007, claiming his views limited their academic freedoms -- Farris is now traveling the state with his task force, seeking input and stirring up doctors. He's standing up for a subject that few of his political detractors would have predicted: science.

"Science is about evidence and proof," he said. "And right now that can only point to one conclusion: We don't know nearly enough about this disease."

More heated than abortion

On a recent weekday, Farris introduced a reporter to some of his children, five of whom still live at home. His wife, Vickie, was in the next room with a home-health aide, who was cleaning out the catheter that delivers twice-daily IV antibiotics into her arm -- the most controversial treatment for chronic Lyme.

"This is our son Peter. He has Lyme," he said of the 13-year-old. Then he riffed on the impact of Lyme on his family. "It's kind of like an AA meeting around here: 'My name is Peter. I have Lyme.'

" 'Hi, Peter, we love you.' "

The Farrises live at ground zero for Lyme in Virginia -- Loudoun County, which has the state's highest rate, with 201 new cases diagnosed in 2009. Farris relayed his family's saga with the disease with candor, passion and humor.

It took more than two decades before Vickie's bladder pain was traced to a tick bite many years before. The pain was intermittent but at times so severe that she likened it to childbirth labor.

The Farrises believe she transmitted the disease to their youngest six children in utero, and the oldest picked it up independently via another tick. Vickie Farris and 22-year-old Michael Jr. have sought treatment by a well-known Lyme doctor, Dr. Joseph Jemsek, who moved his practice to Washington, D.C., after losing his medical license in North Carolina for treating patients with long-term antibiotics. (The other children, who aren't as sick from the disease, see another Lyme-literate practitioner.)

Like many chronic Lyme patients, Vickie Farris insists that IV antibiotic treatment is the only thing that has provided pain relief. But it's typically not covered by insurance for longer than 30 days because the treatment is deemed outside the guidelines issued by the Infectious Diseases Society of America and echoed by the Centers for Disease Control and Prevention.

The IDSA and CDC insist there is no scientific proof that chronic Lyme exists, nor is there evidence to prove the efficacy of long-term antibiotic treatment.

Such is the reasoning behind Mike Farris' call for further study.

He argues that the medical establishment lets professional egos and fear of malpractice stand in the way. "The more I started reading and thinking about it, I said, 'This is a political problem. This is just politics,' " he recalled.

"And so, a friend of mine once said: 'Never tell Mike Farris your problems. He'll start something.' "

When his old friend McDonnell offered him a political appointment, Farris looked down the list of potential committees and saw nothing that inspired him as much as fighting for Lyme. So he persuaded the governor to sign off on creating a 15-member task force that Farris could lead. It includes representatives from the state Health Department, the state Department of Game and Inland Fisheries, a psychologist, Lyme disease advocates and a member of the Medical Society of Virginia.

During one of the group's first meetings in November, an IDSA doctor from Maryland implied that the Lyme community was guided by emotion rather than science. Farris jumped on the claim immediately, saying the IDSA didn't have the market cornered on science and calling the doctor's claims "audacious."

"I lost it a little bit," he said later.

"Listen, I've been an activist in the abortion wars, and there's nothing that gets close to this" in terms of controversy, he said. When he called to ask an IDSA doctor to testify for the first hearing, Farris recalled, "the office manager lit into me! She said, 'What are you dong spending taxpayers' money on this? We don't need any more studies. This has all been settled!' "

Concerns about transparency

Farris maintains that he's keeping an open mind as the task force travels the state holding hearings. But members of the medical establishment -- including the CDC's head spokesman for Lyme -- have raised questions about conflicts of interest.

"We're concerned about transparency," said Dr. Kevin Griffith, a CDC epidemiologist based in Fort Collins, Colo. "It's positive that Virginia wants to look into this, but ... the task force leader is someone who believes that his wife and seven of his kids have chronic Lyme, and I think that would be a concern."

Griffith also disputes Farris' contention that the science on Lyme is incomplete, citing three double-blind, placebo-controlled studies concluding that long-term antibiotics are no more effective than a placebo treatment. "If they're advocating [for more studies], the onus is on them to try to prove that [long-term treatment] works in a placebo-controlled study," Griffith said. "So far, there is still no evidence to prove there is a long-term chronic infection."

Griffith said that he and other public-health professionals are tired of being "painted as the bad guys in this" -- and would be happy if a legitimate, placebo-controlled study came forward to prove the claims of the chronic Lyme advocate community.

They argue that anecdotal patient stories, even by the thousands, aren't proof enough in today's world of evidence-based medicine.

"Anecdote doesn't equal data, true," Farris argued, citing an oft-spouted saying used to discredit stories of patients being helped by long-term antibiotics. "But it does equal grounds for more study -- especially since the studies they concluded this on are involving about 225 people.

"There are more people in Loudoun County right now that have Lyme than that. ... If we don't have a massive Lyme epidemic, what we have in Loudoun County is a massive mental instability epidemic," he said, referring to patients whose doctors tell them the Lyme is "all in their heads."

Farris said he hopes the task force report, due in late spring, will shed light on the need for more research and greater public awareness, amid both doctors and the general public. Meanwhile, he's enjoying "fighting for the underdog," for a cause that transcends the political and religious boundaries he usually walks.

"There are people who don't like much of my politics that are really appreciative of this because their families have been affected, too. The sad thing about this is, the threat is there for all of us.

"We should be telling our soccer teams, 'Don't chase your ball into the woods,' " and reminding people of the need for daily tick checks, especially during the late spring and early summer peak months for Lyme.

Farris has never tested positive for Lyme himself, but with all those deer in the former pastureland that is his front yard -- it wouldn't surprise him. "I was finally able to kill more deer with a gun than with my car," he said, smiling.

As for the deer still foraging in his front yard, he said he's considering a new strategy for next year: bow hunting.

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